5 Things I Don't Want to Say Out Loud When My Illness Gets Worse

I am currently lying in bed awake because my skin tingles so bad I can’t sleep. The torn muscles in my hip don’t help much either. I couldn’t even finish a sentence today because I kept stuttering. My normally stoic roommate looked at me with a mix of pity and concern. But I have people who care. And I can’t tell you how much of a difference that makes. If not for the man laying beside me, I would be curled up in a ball sobbing hysterically right now. That’s how bad things have gotten.

But there are things I still don’t tell him. Which is why I’m writing it. I want you all to know that I love you. Your support, your help and your faith in me to make it through impossible odds. But there are things I (and others with chronic illnesses) don’t want to say out loud.

1. I don’t feel like a person.

Right now I have so many different things going wrong in my body that I don’t even feel human anymore. I feel like a broken vase that can’t be glued back together. I feel like a bundle of illnesses. Of broke bits and diseases. I need to be able to go out and do things that make me feel normal. So don’t suggest that we cancel a trip. Maybe make suggestions as to how we could help my mobility during the trip. This will not only surprise most of us but show us that you really do care.

2. Please don’t baby me or try to coddle me.

It’s bad enough that my own body hinders me. Let me try to do things on my own first. Let me come to the conclusion that I can’t do it on my own. I don’t want to take my frustration at the situation out on you. I know you mean well but I need to come to terms with my illness on my own in this. Ask before doing anything or helping and please don’t be offended if I curtly turn the help down.

This was a new one for me recently. I have had two trips to the ER in as many weeks. The first time is always scary. But go prepared. Bring their phone charger. Bring warm fuzzy socks. Bring snacks for yourself while you wait. They may not be able to eat or drink until they see the doctor but they also don’t want you to suffer. Bring little things like Chapstick because hospitals tend to be very dry environments. Keeping your loved one entertained while we wait helps both of you keep your mind off why you are there. It wouldn’t be a bad idea to keep a list of your loved one’s medications and current conditions on had as well. Maybe stashed in the car somewhere.

4. Sensation can be painful.

Whether it’s sound or touch or watching someone bounce their leg, some of us can get overstimulated easily. If your loved one places a hand on your knee to stop it from bouncing, understand that the motion is probably making them nauseous. The scratching on their leg might feel like fire. Rubbing their back might make them want to scream. Hearing music or TV too loud might be too much for them to concentrate on anything else. My body is trying to process all of my pain signals and sometimes that’s enough to drive me to distraction. Anything extra seems a special kind of hell.

5. Be patient.

We are learning our illness right along with you. It may feel to us at times that our world is out of control because we have a new symptom that we don’t know how to cope with. We may be moody. We may snap at people we care about. But it likely doesn’t have to do with you. We are going through our own grieving process of losing our mobility and our independence in some cases.

It’s a tough road to walk. But with those of you who stick by our side we somehow make it through. We love you dearly and come to rely on you for more than you may realize. So please, be patient and love us. That’s all I ask.